The Mu Rhythm Bluff a novel by Jonathan Mitchell

Friday, January 20, 2017

My open letter to Donald Trump regarding neurodiversity

January 20, 2017

Dear Mr. President:

I’m a sixty-one-year-old man with an autism spectrum disorder. This disability has made my life very difficult. It has prevented me from ever having a girlfriend, I’ve had very few friends and it has greatly impaired my ability to make a living. I worked sporadically between 1979 and 2006 but was fired from more than twenty jobs. Because of this, I retired at the age of fifty-one. I was denied social security disability insurance and am supported by my elderly parents who might not be around much longer.

I had to go to special education schools for eight years and was expelled from a mainstream school. I barely graduated high school and then barely graduated college. I have to do a self-stimulatory behavior during the day which impairs me from being able to do the writing I want to do and it makes it hard for me to get anything done. I have horrible fine motor coordination and have nearly illegible handwriting. I have a very loud voice, repeat a lot of the same things over and over again and people find my behavior offensive. Compared to most others on the autism spectrum, I have it good. In addition to supportive parents, my affliction is mild. There are others who can’t speak, injure themselves by banging their heads into walls, are incontinent, and need life-long care. I long for research to be done into how people with my disability can be helped. Ultimately, I’d like a cure for autism, though I realize that’s unlikely to happen in my lifetime.

The reason I write you this letter is because the executive branch of the government, namely the secretary of health and human services who will serve under you, appoints members to the Interagency Autism Coordinating Committee which advises the government on autism funding and policies. Some of the past and present appointees belong to an insidious movement called Neurodiversity. These people do not believe that autism is a disorder, and, in some cases, do not believe that it is a disability. They make the untrue claim that acceptance and the correct accommodations will resolve the difficulties people on the autism spectrum have. A number of these individuals have been appointed to posts in the federal government and make decisions on how American tax dollars are allocated for autism matters. They are opposed to curing autism or doing things that will really benefit autistic people. I don’t believe these people should be involved in making decisions using American tax dollars.

One of these people is named Ari Ne’eman. He heads a non-profit organization called the Autistic self-advocacy Network. Since the CARES (formally combating autism) act was made law by congress, his organization has had a chair at the Interagency Autism Coordinating Committee. In the past he’s stated that he does not believe that autism is a disability or that if it is a disability it is because of societal constraints. He’s barely afflicted by his alleged autism if at all. He has implied that people who want to cure autism are morally complicit with murder. He has stated that the solution for autistic unemployment is to eliminate social pleasantry as a hiring criteria on the job. He has also called you a fascist saying he would not work with you for that reason. Therefore, I don’t believe that he or anyone representing his organization should be appointed to the Interagency Autism Coordinating Committee.

Another individual who has served on this committee multiple years is John Elder Robison. Mr. Robison has stated that there is no need to find a cure for autism. He has stated that treatments should only be left up to the autistic person and that parents should not have any say in the matter of the health of their own children. He has stated that parents who seek treatments for their children often do so as a matter of convenience and not to help the child. He has made the claim that no one had heard of autistic people in the nineteenth century because they blended into the general population due to the type of society it is. He also has made the insensitive and ignorant comment that most autistic people don’t suffer from autism but rather from depression and anxiety. I feel these statements trivialize my disability and I don’t feel that Mr. Robison should be on any government committees or supported by or consulted by the government on any autism-related matters.

Noah Britton is another individual alleging to be on the autism spectrum who has been appointed to this post. He has compared parents who want to help their children with members of the Ku Klux Klan. He stated that he represented thousands of persons on the spectrum who don’t want a cure. He has made a mockery of a U.S. government meeting by wearing a raunchy shirt with the letters “my body my choice” emblazoned on the front.

Another individual named Matt Carey has also served on this committee and he has advocated for the ideas of neurodiversity.

I don’t believe that persons such as these or the organizations they represent should have any involvement in governmental policy making related to autism. And I am writing this to you in the hopes that you can do something about it.

Though there is a law enacted by congress authorizing this Interagency Autism Coordinating Committee, these people are appointed by the executive branch of the government, namely the Department of Health and Human services. I am writing you this letter urging you and your HHS secretary designee, Tom Price, not to appoint these people to the IACC or preferably anyone else to the IACC. There is no other medical condition other than autism where they have lay people who give input to the government or policy and science matters. For example, there is nothing like this for diabetes. We don’t have people like these serving on FDA panels to decide which antibiotics are approved just because they or their loved ones have had an infection. Ergo, there is no reason for something like this in autism either.

These members of neurodiversity only undermine and trivialize what is a horrible medical condition. I will forward a copy of this letter to Mr. Price once he is confirmed by the senate to his post.

8 comments:

Here is my opinion on the whole social pleasantry thing in the workplace. I think we can fit it into three categories. 1. Hygiene, 2. What we say with our mouth, 3. The whole non-verbal language.

I think one should shower and shave but I think if one has over-grown fingernails it should not be a big deal. I do think we need to make sure we don't smell or have bad breath. I think we should make sure our private areas are clean as well. If one stinks to high heaven that is a major disruption. I think this is one social pleasantry that should not be eliminated.

If we say something rude and we don't know it and we don't know why I think we should be given reprimands and have it explained why it is rude. Example: When I was 15 I asked an older gentleman at Kroger when I was working how much he got paid. He explained that it was rude and I asked him why it was and he explained. I never ever did it again. The problem was solved.

THe whole non-verbal thing. I don't think anyone should be punished for the amount of grip someone does on a handshake or one should be made to make eye contact. The only exception to this is if one is working with the public like being a salesman or what not. Then, the social pleasantries are essential to one job's duties.

The Americans with disabilities act says that "reasonable" accommodations must be provided for people to complete their duties that are "essential" to the job. If making eye contact or shaking hands with a firm grip is not essential to the duties of my job then I, you and others should not be required to do these things.

Cubed: shows how little you understand about the social problems involved with autism, they are far more pronounced than that. You can go to google scholar and look at the court cases involving behavioral impairments even if it was a result of the disability. Not accommodatable sp? under the law.

This is not what Ne'eman said, he said all social unpleasantries I don't want someone like that making policy recommendations to the government at taxpayer expense or anyone in the organization he is involved with (samantha crane on the IACC this year) to do so either. I have a right to contact our new president and let him know that this should not happen. tbat's the point of this post.

I have read some of the court cases you posted in some of your articles you posted. First, I never said you didn't have a right to contact our new president at all.

Second, I am Autistic myself so I do understand the social problems with autism. I will admit that I only understand them in relation to myself. I've not experienced your issues and you've not experienced mine. We're two different people from two different generations so I don't know. Your issues may be more pronounced in certain areas of functioning then mine and vice versa I don't know.

Third, I have dealt with autistics who are less functional then me. I know of one who has both autism and cerebral palsy. All he does is rocks in his wheel chair all day. The whole autism debate is so inherently complex. Does he have the right to refuse a cure? Should he be able to be true to himself and remain in his state? Is he cognitive enough to be able to make this decision? If he is not cognitive enough then is it ethical to make the decision for him. Is it ethical to change who he fundamental is? On the other hand, how can he know what is in his best interests if he can't analyze all the data before him and understand the ramifications of either way?

How far can this go? Do we have genetic enhancements as well and eventually have a society like the movie gattaca?

Let's say we change their genetics including the autism in the genetic code? Do they become a different person? Does their identity die? Do we change the essence of their soul? Is genetic modification of a human being ethical at all?

On the other hand, if one's life can be improved then would it be unethical to not cure autism and eventually have genetic modification maybe trans-humanism?

How do we resolve all of this complexity? When I look at all of the sides here I see some truth to every side. It's complex! I don't see a simplistic solution to this at all.

I don't know what the intentions of the founding fathers were in stating that. We have the right not to be murdered. We don't have the right to be provided a living, considering how difficult it is to get on disability and even if you get on it, it is impossible to live on $800 a month, so no we apparently don't have the right to be provided a living

Let me ask a another question if you do not mind. In our nation does anyone have the inalienable right to murder ourselves by any means we desire? In other words, do we have the inalienable right to commit suicide?

You have had quite a challenging life. It must have been so hard to cope with stuff. It is good that you are an advocate for autistic people and those with disability. Everyone needs support and a voice that can speak for them when others will not. A lot of issues are being are being brought to light and that will help bring awareness.